lynnie22

Hi, I can relate. I have been on propanolol 10 - 20 mg two times a day (every six hours during the daytime) and have also found my blood pressure to have dropped during the day. I do not take it at night because I figure I am lying down and don't need it for the pulse rate. Sometimes my pressure however goes very high and then I take much more. What is important is what mydoggielovesme said about electrolytes and plenty of fluid and salt. I don't even take my first dose until my bp is above 100/60 in the AM after about 16 oz of water. I think part of it is dehydration in the AM, at least for me. Everything mydoggielovesme suggested sounds good. DRINK. Not necessarily coffee, which can dehydrate, but water with electrolytes or water with salt or V-8 juice, one of my favorites. One of the problems with propanalol although I'm still on it is that it does drop the blood pressure, but true of all beta blockers. Midodrine is a good suggestion too, I can't take it because of my spikes, but start with fluid and support stockings and see.

Thank you futurehope. It is good not to feel alone. It's so strange when we don't know why things are suddenly normal. But good for you! I certainly hope whatever you are doing, it just keeps working. I'm sorry though it didn't change everything else -- maybe in time it will help. Since my thyroid was removed, things have just been very frustrating. I am nervous to be honest about taking the armor, my endo keeps warning me that it could cause palpitations or make my pots worse....so he has made me anxious! But I'm trying not to listen. After six years of abnormal readings and feeling lousy (whether nor not it's thyroid hormone related) I want to try something else. How do you find the exercise program for yourself? I can hardly do anything, I am always so tired. I know however it is really important.

Thanks. Arizona girl, your details were very helpful. To answer your questions, my FT4 is always a couple of points above the normal range, and my FT3 is below the normal range. My TSH however remains within normal. I do not know if my symptoms are hypo or hyper to be honest -- I am anxious, tired, shaky, sleepless, with of course tachycardia upon standing (the POTS), and have never felt right since being on synthroid and since the T4 has been 14 or so, 11 being high of normal. I hope the armour does not cause an autoimmune reaction as you were warned, not sure how much POTS is related to autoimmune dysfunction. Armour contains all the missing thyroid hormones, like T1,2,3, and 4, since it is taken from the thyroid of a pig. I do not know if any of the tests you mentioned were done. That would be interesting. One of the pots doctors here said in passing that once one gland goes, they are all susceptible, meaning without a thyroid, the adrenals would easily go out of balance and set off some of the autonomic dysfunctioning possibly. I am glad to hear that I am not the only one in the universe with a conversion problem. I was on a thyroid site and NO ONE there had this issue either. It is interesting that you have been taking off T4, and now only on T3 (cytomel). How are you doing? Margie, what makes the doctors think your thyroid is the problem when your readings are so good? I know you only have half a thyroid but it is obviously functioning quite well....although I would question it too.

I have no thyroid. I had it out six years ago because of cancer and have been on synthroid ever since. Since out, my T4 has been very high, with a normal TSH and has never been able to convert properly to T3 which has gotten lower and lower. My endo says I'm his only patient with this problem. As my conversion got worse, in came the POTS, at least so I was aware of it. I know there has been some reference to thyroid problems here, and to Armour which my endo has finally and reticently decided to switch me to. I know that pots has a hormonal component -- and wonder on the correlation between my body's inability to recognize and convert T4 properly and its autonomic dysfunctioning. I was wondering if anyone else had a similar problem, or knew how they affect each other. Thanks for your input!

GypsySoulNicole, how do the Earthling products work? I would be glad to purchase the sheets if I could understand how they replicate the actual earth energy

I would also really like to know what helped people get better. I know it can be individual, but it sure would inspire me to know. Thanks.

Hi Jangle, I went to MAYO in Rochester almost three years ago and that is where I first got diagnosed. I think alot depends upon who you see, but I agree that they are very available to talk to you and refer you to other departments as needed. Definitely bring your list of questions and medication concerns and treatment options. When I went I had no idea what was wrong with me, had some real thyroid hormone issues and thought that was the problem so I booked an appointment with an endo. Thank God I also booked with a cardiologist who knew about POTS and ended up setting me up for all the tests. The endo did not. They did end up giving me treatment recommendations, and the cardiologist was available for several months afterwards for follow up questions by email and phone. I think it is probably best though to see someone from neurology set up. I am thinking of going back at some point because of continued issues, not just around POTS, but also because of that. Good luck. Because they seem to make themselves available after your trip, you might be able to make out a continued treatment plan.

Hi Mydoggieloves me. My conrtisone injection did nothing. It's in terrible pain which is why I'm up at 4:30 in the AM. I think I'm going to give in and get another myself. My shoulder is torn and frozen. I went to a new ortho and he felt that a guided shot into the joint will free up the freezing and the PT will help it then become unfrozen, the main source he thinks of the pain.Makes sense even if I hate the injections. Glad you're feeling better!

You are so right about STRESS....and WORRY....Living in NYC has become a stress, because of the expense. I just came back from a POTS doc, up at Columbia. Not much to offer in the way of fixing. Said I have the type of POTS that is about having an overly sensitive sympathetic nervous system, reacts 10x more to everything. Whatever type that is. For the last couple of weeks, my whole body has been shaking. Think it may be hyperthyroid, since my body cannot assimilate the synthroid it is dependent on. But maybe it's partly anxiety and STRESS. Blue, I like that thought. My idea of perfect living. Thanks Cupcake for the virtual calm. I need it.

Hi Achilles, I was thinking of going there before I ended up going to Mayo. YOu need to check this out, but what they told me when I called John Hopkins is that you make an appointment with a doctor, period. No week of examinations, they said. That was three years ago. It could have changed. I'm not sure if there is anywhere else like Mayo, although even there, so at least my visit proved, you have to be a little lucky in who you schedule appointments with. I'm not sure they would have discovered my POTS if I didn't have an appointment with a cardiologist who was POTS aware. The endo I saw there had no clue. I would call John Hopkins before going.

Hi Adina, Thanks for your support. I do need to tell you though that I did see Dr. Horatio Kaufman two years ago and then a few months ago to beg for his help, and I am certain your neurologist is excellent, but unfortunately, I had a negative experience with Dr. Kaufman. I did end up going to Dr. Weimer of Columbia Presbyterian who at least was able to give me a confirmed diagnosis through another set of testing. Thanks for reminding me that things get worse from the dys with pain and other problems. Lynnie

Thanks for your replies. E. Soskis, I have no idea what type of POTS I have. Never told, recently retested, still don't know. I don't know if my pupils are dilated on their own and my opthamologist and other doctors except cardiologist and endo have never heard of POTS. I have never had this trembling before until a few days ago. Doctors think my very high blood pressure spurts are related to my level of adrenaline, but not certain. I have immediately looked up biofeedback in the area. Thanks for the suggestion. What do we do when we feel like we're having a complete breakdown? Monday is work and Friday I had to cancel work. Because I've been sick on and off for many years, I never saved money for old age, and here I am close to that time, and that sure is a stress if I can't function.

Lately I feel like a car wreck, and it is having a huge impact on my ability to do anything. I know that many of you have it much worse with POTS, and I don't know if these new symptoms are POTS related are not, but I feel like my body is out of control. It is very scary for me, because I work, live in NYC, and suddenly I feel unable to function. A few months ago, I developed this incredibly erratic blood pressure that is low one minute and zooming up to 160 or 170/120. I take inderol (probably for about three years now), and am always taking different dosages and when my blood pressure is high I am dizzy and can't function. Two months ago I tore my rotator cuff in my shoulder and have been in terrible pain and can't sleep well. I had a cortizone shot which hasn't helped the pain at all but may have worsened my blood pressure. They haven't come up with a plan for the shoulder, and are reticient to give out pain meds. But then I am not supposed to take pain meds until I have holes lasered into my eyes for narrow angle glaucoma--because any pupil dilation may bring on blindness. I have developed this constant trembling now, mainly inside, dizziness, alot of anxiety, and weakness. I don't know what anything comes from, nor how to make it better, but more and more I am canceling work, and fearing that I am going to have a stroke from the huge escalations in blood pressure. They have tested me for cortisol and metanephrine levels (blood and urine) and they are only slightly high. The Dr is going to do an MRI of my adrenals to check for tumors. I know I am under a lot of stress. The eyes and shoulder are not POTS related, but not sure if all this other stuff is and what to do for it. I feel truly overwhelmed and scared. Things just went from manageable to out of control.

I posted a couple of weeks ago about whether I should get a cortisone shot for a torn rotator cuff with a lot of pain. For weeks I tried to get pain meds unsuccessfully, and tried some PT also unsuccessful -- so I finally got the injection yesterday. OUCH. The pain after the novacaine wears off is excruciating. But moreso -- I was concerned whether Cortisone, seeming to be related to our adrenals,( although the orthopoedist denied the relationship) would create trouble for my autonomic nervous system, especially my blood pressure. And what other effects it might have. Day two and my blood pressure has been going up a lot suddenly. I have this problem anyway, but usually two days a month. This is definitely an effect of the cortisone. The doctor denied this to be a possibility. Most of you who answered seemed to have done okay with the interaction. For me, at least as far as after pain and blood pressure, it hasn't been great. I am waiting to see if it will help. It is terrible that no one will give you pain medication here.

I take ambien to help me sleep. I have alot of problems sleeping. I take the long acting form. I seem to be drug resistant when it comes to sleeping pills, so it doesn't always work, but it doesn't leave a hangover. For some people, it has some very strange side effects -- like with SeattleRain. But most people don't from what I know. Although be mindful of things like: finding crumbs in your bed when you wake up in the morning. There seems to be a connection with ambien and sleepwalking/eating. For most people, it's perfectly okay though. Never affected me that way. On the nights that it doesn't work for me, I am up watching television, no effects. We need your sleep for sure.

I can certainly relate to feeling lonely and not being able to see friends the way I used to. I understand how frustrating it is when people don't really understand what it's like. My closest friends really don't "get it " I manage to get to work which is close to my home where I see people for my work-- and that's my social life for the most part. I can't really go out much and it's really hard to visit people which people seem to expect all the time. Anyway, I'm really sorry that you're in the straits right now. Hopefully you'll start feeling better. Tomorrow I somehow have to get myself on the Long Island Railroad to visit a dear aunt who is in the hospital. She understands how I feel, how hard it is but she's going to have surgery and I must see her. Boy that walk, those stairs, the distance is so challenging. Since I have joined this group, which hasn't been long, I have found it so helpful. It's not the same as being with someone in person and I miss that. But it's really great to be able to talk to people who understand. That should be able to help you all of us. Do you think that if people understood this illness better was more familiar with it that they'd be more understanding? Sometimes I think so and sometimes I think that people will be sympathetic but can never fully understand anything unless they've been there themselves. Anyway hang in there!

I've read on the site about the several causes and types of POTS, and think it would be helpful to know the cause so one can figure out the best treatments. Whether it's adrenaline related or post illness....I actually find the possible choices confusing. I have no idea what caused my POTS, and am really uncertain when it really began. It could've been years ago, since I've had two episodes of similar symptoms ten years apart, or three years ago before I went to Mayo. All I know is that I continue to get worse, at least the tachycardia does. One of my problems is that I am deconditioned, started that way, and now worse. I know that isn't helping my tachycardia, although working out, even on the bike, makes the tachycardia worse. I guess this is a two part question. How do you know what type of POTS you have, and how you got it, and what can you do when it just keeps getting worse? Thanks for your input.

Hi Batik, sorry for the delayed reply. Quite a week. Thank you for your support. Now I know why it's been so hard to get pain meds, and I am also horrified that they are suggesting surgery, or at least this surgeon was. It more horrified me that he suggested that I am too 'old' for rotator cutf surgery even though the tear is supposedly not big, but instead tearing my biceps. It is bad enough that I have torn something, why would I want something else torn? I may indeed get that cortizone shot at this rate, and do PT with a good PT if I can find one. There is little out there in the way of pain support.

Hope it goes well for you Naomi. I like what My doggielovesme2 said. I got disability several years ago for CFS, took two times and the judge was very favorable when going over the limitations. Good luck.

wow, it's good to hear all your stories. Most of you sound like you've had pretty good experiences, although it is very clear that alot of fluids beforehand and during is really important. I had an endoscopy about a year ago without a problem, but my POTS has gotten worse. It does sound like a good idea to try to have it in the hospital. I have always for years used this gastro in a practice but haven't done a colonoscopy in over 10 years....way overdue with some symptoms. He never heard of POTS. None of my doctors except the cardiologist and POTS doctor have. They know nothing about needing to be hydrated, and look at you blankly. "POTS. What?" And then I have to explain. But your advise is great, very helpful. I was going to set it up with the doc I usually use but have been concerned because of it not being a hospital and his lack of knowledge of POTS and my concerns, so I may change my venue. Badhbt, I have no access to IV fluids on my own, but I can certainly have some when I have the procedure. Sometimes, when I'm on these boards, I feel like NYC is a hick town and some of you have much better access to POTS-wise healthcare.

Hi, Orthohypo, the compounding gels sound very interesting. If you post, I will get a chance to read the ingredients. I am in NYC. I didn't realize that lidocaine came in patches too -- the doc today did offer a shot of it and/or the cortisone. It sounds like you've been through a lot with pain. Sorry to hear that. I also have severe osteoporosis and am alittle concerned about cortisone injections near my bone, but I know everything has side effects. I am interested in your suggestions. Thanks, Doggielovesme2, for the info on Tramadone. I change my mind. It sounds pretty strong. I am not eager to be on meds either -- just to be rid of this pain and feel better. Have you been on it or know someone who has? What do you think of cutting away half your biceps to end the pain? Sounds a bit severe to me.

Hi, Well reporting in. Went to see the shoulder man recommended by my internist -- a surgeon -- and guess what he recommended....of course. But most shoulder specialists are surgeons. He thinks I should have my biceps cut, leaving one bicep. He says the pain is coming from the slight tear in the biceps that are attached to the rotator cuff. It made sense to me, since most of the pain is in my upper arm. As far as pain meds, you must be right, Katybug, cause he was sure hesitant to give me anything. Tylenol or advil, they suggest. He finally gave me a prescription for tramadol, I have no idea what it is. Anyone know? I am in NYC and Batik, I sure have asked for pain meds, even from the original doc. He said he was calling something in, but never did and then went on vacation. Next week I have one more appt with a shoulder sports medicine surgeon -- a client of mine went to him and he suggested no surgery, so hoping. I asked today's doc to give me a new prescription for PT -- have to find a good place to address my shoulder, my neck and the POTS. But as far as pain, no instant cure for sure except the cortisone shot everyone wants to give This doc today did agree that it causes elevation in bp, which might be good on my low BP days, but not on the high ones. Thanks for your concern, doggielovesme. I do think I may end up getting a shot from someone. I'll just take the day off from work so I can counter any side effects I hope.

I am she. Actually, my internist FINALLY after two months of this has realized when he saw my bad shoulder is very distorted looking decided to send me to another ortho who specializes in shoulders. Unfortunately, this doc is going on vacation. Still, trying to be squeezed in tomorrow before he leaves, if I can get all my films before. Hopefully will do.

My bp is generally very low and of course, much worse with dehydration. I am long overdue for a colonoscopy, much needed, but can't figure out how to get through the prep, let alone the anesthesia. Any suggestions or not a problem?

thanks, Katybug. The doctors aren't as concerned about cortizone as I am. My cardiologist doesn't know much abouT POTS, and the POTS doctor is still trying to figure out why I have POTS, what type, and finds it strange that I got it at my age of 64 (61 when first diagnosed). I was reading about all these high blood pressure reactions, and considering my crazy blood pressure, was concerned. I do think the PT I was first going to for this used trigger point release -- but the exercises he had me do tripled the pain. An osteopath is a great idea -- as is more of pain release therapy. Thanks.